Two weeks later, I held my toddler’s hand as the rain dripped from my coat onto hers.

I raised my hand to knock on a big, beautiful brown door.

I saw it open before I could stamp the water off my boots.

Welcome,

began the conversation that – unknowingly – was about to change my life.

Ten days later, my six-year-old fell apart.

It happened so suddenly, so sullenly.

The world got smaller, more overwhelming, more threatening.

Our family started on a crash course towards

all those things we’d judged other parents for doing,

not the least of which was

homeschooling.

Its hard to remember myself then.

What I do remember is that homeschooling was the last thing on my mind that day that I knocked on that door.

In fact, it was on the list of things I said I’d never do.

(Don’t say those kinds of things. You only end up doing them, and feeling like a idiot when you do.)

Like,

really.

Who would ever teach their own children?

That’s why we have professionals.

They are the ones who know how to manage thirty children without checking into the psych ward. They are the ones who understand childhood development and fine motor skills and friendly behavior and how to make friends.

Yet three months later, I found myself walking into the same house and greeting a mass of new faces

who probably didn’t know anything about me.

And, really, where did I start?

– Hi, I’m Lana, and I have leukemia?

That’s a conversation stopper if I’ve ever heard one.

I’ve pretty much memorized

the look I know I will get

every time I mention the C word

in connection with anyone close to me,

let alone

me.

Most of the time it comes with a fraction of a retreat,

as if we all can’t help ourselves

but think that

hardship might be contagious

or

those who suffer might dampen our otherwise sunny outlook.

Here’s a hint:

They won’t.

At least, the ones who’ve suffered long enough and hard enough won’t.

They know what those who’ve suffered only lightly haven’t figured out yet:

it doesn’t have to take you over.

It doesn’t have to make you sad.

It doesn’t have to shut the door on

laughter,

friendship,

or the inexplicable spring of hope.

In fact,

Sometimes the end of ease is the beginning of everything else.

Because every so often,

when I’m brave enough to say that C word,

instead of a flinch I see

eyes of recognition,

of defiance,

of courage,

and grace –

Eyes that have looked the beast in the face

and

stared him down,

not let him win,

not let him get inside,

even though, quite literally, he might be inside.

I’ve seen these eyes in anyone who’s survived the extraordinary,

in anyone who’s lived to say,

I know what it feels like to have a piece of death inside.

But I didn’t let him have all of me.

Life with CML is unpredictable. There is no real prognosis. There are no guarantees.

There is really very little idea of what will come, or when.

And that’s a good thing.

There’s so little to know because there’s so little of usnot living.

It wasn’t always like this.

Twenty years ago, people with CML could choose between two options:

1) a year or so of life on Interferon,

if you call puking your guts out living,

or

2) death.

But somewhere in a seemingly boring genetics lab,

a young man too busy for anything but the

compulsion to give his patients

a better prognosis than certain death

whittled away

on the drug he thought might shut the whole thing down.

When it was ready,

they called it Gleevec.

My then-fiance emailed me the press release from the university he was working at the summer the trials finished.

I shook them out – too morbid, really – and quickly changed the subject:

– How’s the rest of your week? I wrote back.

Now,

some thirteen years later,

I’ve read as much as I can about this first generation of the drug that changed everything

because,

for the first time they’d figured out exactly what was wrong with these people

(people like me)

and they’d found a way that might

fix

just

that.

Last month, one of my closest friends ran a half marathon.

She finished in less time than it takes me to watch a movie.

(Yeah. I know.).

When I congratulated her, she said –

you could do it with me next year.

(Yeah, right).

I laughed in her face.

I mean, we call this woman

The Gazelle.

And… I’m not a runner.

Don’t be silly, she said. You could for sure do a 5K.

Another woman standing nearby overheard our conversation and volunteered to run with me.

I looked over to her and saw those eyes of recognition.

So we both looked back at The Gazelle and said,

Sure, why not?

Because really,

everyone has a reason

for doing the thing

the rest of us think is crazy,

even those

who are really good at that crazy thing.

The next day,

I woke up feeling sick to my stomach.

What have I just gotten myself into?

I opened my closet to find no acceptable pair of shoes with which to even attempt a run.

So I dragged myself to Running Room.

Why are you here? said the nice lady with the green running hat.

I bet she asks that a lot, I thought.

– I got talked into a 5K, I said.

She smirked.

Okay.

– Please give me shoes that will make it hurt less, I pleaded.

She laughed. Her eyes danced a little bit.

I need to see you walk first, she said.

Okay.

I strutted around the cozy little store for active people

(people I didn’t feel like I belonged with quite yet)

in my structurally-incorrect flip flops,

then barefoot,

then in one pair of shoes,

and another,

and another.

And then –

What’s going on with your right leg? Running Room Lady asked.

I stopped and screwed up my face.

– It’s fine, I said.

She looked unconvinced.

– I started running to take a break from weight lifting, I said.

Why’s that? she asked.

– I hurt my arm in January, I said.

– Fell down the stairs.

– Stupid.

Her eyes slid up to mine.

You hurt anything else in that fall?

My mind flew back to that night. Instinctively I reached back to my right hip, where I can still feel

this

slight

indent,

an indent that came from a bruise;

a bruise that wrapped around the backside of my hip for three months.

I don’t know too many right-handed people with a stronger left leg, she explained.

The leg you should be relying on,

you’re letting be dragged around by the one that doesn’t know how to lead.

Fifteen minutes later I left the store with a fuzzy head and a pair of shoes that made walking feel like bouncing on a pad marsh mellows. And as I stepped from marsh mellow to marsh mellow, the only thing I could think about was how I was walking –

the muscles I used,

the places it hurt.

– I think my right leg might be shorter than my left leg, I told David later that night.

Maybe you need to go back to the RMT, he suggested.

– Maybe, I admitted. But maybe –

What? he asked.

– Nothing.

I woke up the next day after my post-night-shift-nap, and –

having told too many people I was running to back out now –

I went for a run.

In pouring rain.

In brand new shoes.

And a weak right leg.

And as I ran/walked –

(because, lets face it, people: I have the app. I do what it tells me.)

I realized my right hip hadn’t hurt before this because I hadn’t been using it.

My right shin, on the other hand, hurt like (*#&$@.

I came home, drenched,

sore,

and a little bit relieved,

because

I knew exactly what the problem was:

I’d hurt something so long ago I’d forgotten how to use it.

In fact,

I’d worked so well around my injury that I’d never have noticed something was wrong

if I hadn’t started running.

I want you to do one-legged squats while looking in a mirror, Running Room lady said. Keep that knee straight over your foot.

I did exactly as she said and nearly fell over.

My right hamstring was a noodle.

– How have I been walking like this for so long? I asked David.

Probably just got used to doing what you needed to do to make sure it didn’t hurt, he said.

It’s been a year of improvements in our house –

and none of them have been exterior.

Truly.

Our home renovations have been seriously and frustratingly derailed by these things demanding our attention,

things that take over and make over our insides.

It’s so much harder to make yourself over on the inside than on the outside.

So much harder, in fact, its almost impossible. So impossible, its almost as if we need an external force to do it: an intervention of sorts, a friend, a Higher Power, or some kind of

Pain.

And believe me, I didn’t go looking for these improvements.

They were forced on me by what I like to call relational torture.

We could also call it conflict.

None of it would have happened if not for that knock on the door thirty months ago,

if I hadn’t pushed myself just a little bit to try something that scared me.

And all those scary things really do is expose all our weak bits so we know exactly where the problem is.

And,

as Running Room Lady said,

The antidote to weak muscles isn’t to rely on our strong ones. It’s to lean into the weak ones until they’re strong.

This week I knocked on that same door from two and a half years ago. I was greeted by an easy camaraderie, a developing sisterhood that brings out all my little parts,

especially the bits that need working on.

Once they’re there, I can’t retreat, run, or explain them away.

Because this kind of relationship is just one of many who, in the last two years, saw inside

and gently

but persistently

said

you can do better.

We know it.

I think of who I was back then. I remember the patterns, the things I said, thought about, did; the things that occupied my time.

I cringe about some of them now.

Every so often I find myself in the same kind of situation, one where Old Lana would say a certain thing or feel a certain thing,

and I almost feel this need to do it the Old Way.

And then I stop.

Because, really?

I’m not Old Lana anymore.

Friends.

Please hear me on this.

I have a thing. A big thing. A thing that means my life will never be easy. The seed of death is inside me. I will always be climbing uphill. I will always be forced to work hard to be healthy.

Some hear my story and ask me, so where are you at now?

I know the answer they’re looking for.

– I’m not in remission, I say. But I’m okay.

Some people have difficulty with that. But that’s not okay, they say. We’ll pray for you, they say. Why don’t you try a different treatment? they urge.

My answer is almost always the same:

– Because I’m okay with not being okay.

Friends.

We are all looking for that resurrection moment.

We’re all looking for that moment we can say, glad that’s over. Let’s get back to normal now.

And while I wouldn’t mind that to happen for me, I also know that

our obsessions with endings can leave us discouraged by our middles.

Because while we’re waiting for the hard things to be over,

we sometimes miss the real resurrection moment,

the moment we lean into our weaknesses and realize we don’t mind the stretch.

Because we’ve gotten used to discomfort,

and realized that some of what we thought was broken was really just weak.

hi you! it’s funny, the timing of your blog… I’ve been trying to get someone this week to go to the movie, the Fault in Our Stars, with me, and they have all said no, it’s too sad… I tried telling them that sure a kleenex might be in order in the end, but that isn’t what the movie is about… it’s about the positive messages of helping her enjoy her life, screw what happens down the road, she’s here, now… about deserving to feel, it’s ok for her to feel, let loose, laugh, to love, to be loved… to LIVE… and it’s ok to open up and let him love her and not shut him out so he won’t get hurt, he also has a right to his own feelings, and that’s what he chooses… so many positives… and importantly, see the person, not the disability or illness… not sure if I’m saying that all right… anyway… love you Lana, you rock, girl : )

Sammy… I am totally with you!! Haven’t seen The Fault in Our Stars movie but I LOVED the book… Cried, laughed, felt like I became friends with Hazel by the end of it… Like she reached into my brain and said everything I wanted to say… Beautifully and powerfully told. ‘Im happy with my choices,’ I think she says at the end. Me too. 😊